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I find it a bit odd to be writing this post. It isn’t odd that I would write about caregiver abuse, but that I would write about it again so soon on a personal level. I’ve been quiet about it because I didn’t want to spoil the surprise for my not so perfect now ex-caregiver K. Remember when I posted that the Honeymoon was over? I didn’t talk about the whole there, nor did I mention that K was going to be fired from that moment, as soon as I could find a replacement.

K was not as bad as the other abusive caregivers I have dealt with, but, she was worse in some ways. She was abusive to my neighbors, not just me. No one should be abused but I have always felt it should just be me, if anyone at all. Not heroically but I don’t want anyone else to hurt. I also was a bit unaware of some of the abuse, still in survival mode. It all hit me at once the other day, but a couple of days ago (That’d be a Monday) things exploded.

Before going into that I want to list all the ways K was abusive that I can think of, partly because I still feel this little niggling doubt, these caregivers can’t be all bad right? This is a symptom of abuse itself. It springs from that old addage, that if the problem keeps reoccuring it must be you. I realize that there may be truth there, but, with abuse it is not the fault of the victim, no matter who they are.

K’s Ways of Abuse:
Tardiness. The instant she was aware that I couldn’t just fire her, she became so unreliable I spent the next few months literally just waiting for her. This meant no appointments unless I wanted to risk punishment, this meant missing religious activities, personal activities, and put me back into that pocket of isolation that I had fought so hard to get out of. This meant also that I couldn’t schedule appointments with other caregivers to interview them.

Offering the Forbidden Foods. Forbidden foods do not just include allergens, which she filled my new kitchen with as she put her own food in my fridge and freezer. This includes offering me food that I specified triggered a PTSD response. Turkey and Quesadillas both to me are the worst food in the world. It’s a bit ironic on that last one but, it is no longer one of my favorite things. I told her clearly when I hired her that these foods were not welcome in my home. If I pissed her off, she would offer it to me, then mock me for being upset if I showed it.

Emotional Abuse. This is a bit of a borad umbrella, springing off of the specified torment above, she’d ask if that was Paul outside, she’d mention how hard it would be for me to escape in this apartment with there being a limited number of exits, she made sure to tell my mother I think she’s a bad mother, she did a dozen little things JUST to hurt me. This included losing things, hiding things, and accessibility challenges though that over laps into…

Physical Abuse. Being denied the ability to bathe, clean clothes, food, etc is physical abuse. So is spiking the heater up to 90 on a heat sensitive person, when they are asleep it is more dangerous. Putting piles of boxes infront of the refridgerator and then not showing up for a few days is also abuse. Making the home in accessible by arguing about where things go and then just putting it where you feel like is abuse. Throwing things, is abuse. Burning food to punish someone for not letting you make up hours you missed by being a lazy (censored) is abuse.

K I sure as hell hope you read this, because I never got to explain to you why what you did was wrong, and your mommy sure as hell never will. It’s also wrong for you to not buckle your child and enforce her seat belt time. If she dies you are liable for her death as Murder. It’s a cold hard fact, and one I hope you never face but, with the way your kid runs around a moving vehicle and distracts the driver, her danger increases. Oh and that warrant for your arrest? Who will take care of her if you never resolve that….

Snarly side note aside the abuse list is a lot longer but it’s hard. I feel like I lost momentum in my writing. So, since I can’t list every abuse let me tell you why she wasn’t given a nice ejection. The last day with K.

It started out on a somewhat cloudy day, I took the weekend to myself, because the endless waiting has left me a very angry client and Friday she was so late that after asking me to get up early so she could come in and have the afternoon off, I said screw it and locked up then went to sleep. I told her I was doing so. I worked it out with the people who are helping me change agencies, the original plan to ditch the pain in the butt, and they agreed with my choice so I gave K the weekend off. She always complains about how hard the work is, how we never have fun etc, so it seemed like a good idea. Side note here, you can’t have fun if you are late and MISS the fun.

So, Monday comes, I slept a bit late, took my time getting ready, I didn’t know if she would show or not. I unlocked the door, go to the bathroom, and the banging starts. An Unlocked Door is impossible to open you see. So I finish my business and go to open the door. She is HOLDING the knob so I can’t help her. I have to work hard to not show my disgust at this and I go and sit down. First things first I give her a chore, the litterbox. Not to punish her but because after five days it is rank. Five Days. She didn’t do it when she was told to the last time.

Then, I decide to ask for food. This is where it all starts to go wrong, apparently my wanting her to do her job is a bad thing. I bought pizza recently, and decided to eat it. So I ask her to put pepperonis on the pizza and use the oven. She supposedly cleaned this oven but I always put my pizza on a sheet and insisted. Now I am glad I insisted on that because with in minutes the oven, which she supposedly cleaned, was on fire. She set my kitchen on fire.

Instead of turning off the oven, opening windows etc, she runs outside for five minutes. I am stuck in smoke. So I start trying to get the window open, because I cannot go outside without my chair. She comes in and yells at me to sit down, so I do. I am not going to waste energy arguing. She then proceeds to leave the door open, to which I ask her to close it and lock the cats up THEN open it. I don’t know why this is a bad thing, I want to protect my cats. They take care of me. She replies with, and I quote because it pissed me off, “You don’t care about my feelings!” Her feelings? I didn’t think before I spoke, “Not right now, no. Now close the cats up.” I am choking on smoke, she keeps going outside to escape it, and then says that crap? Really? She follows this up with a, “After all I’ve done for you.” I let go. I have kept my anger on a short leash, and this is the first time I have yelled. She;’s already screaming at me, and I am not going to have this dumb (censored) in my (censored) house. I cursed too. “Get the (censored the F word) out! You are FIRED!” Somehow, I managed to double yell Fired.

She kind of stood there for a minute, so I got up. I am half expecting her to hurt me, because with everything else? Why wouldn’t she? So she storms out after I grab my grabber, which is metal and solid. Yes, I armed myself just to feel safe. Also I was wobbling badly so I used it to balance and moved forward. She moved back and then threw my keys at me. Then Her keys. Then she stormed out the gate and I locked up. My neighbors and caseworker showed. Kat my caseworker, I haven’t told you about her yet but she’s fantastic even if we get the name giggles, was already there with another client and came immediately. My neighbors all checked in on me and have been regularly when Keera doesn’t show. Since she abused them too, I don’t blame them for staying away when she is here.

I have been alone for two days, and I have been great. I get quiet time, instead of incessant texts that show her illiteracy, not just text speak but gibberish to those who KNOW text speak, chain letters etc. Now, she did steal from me, and that last day took some of my morphine. She also happens to owe me money. Will I ever get paid back? I will sue her if I have to, because she signed an IOU for the money. I decided it was worth it. I even put in an addendum that states that if she doesn’t pay by a certain amount of time, then there is interest added on. She signed it and we each have a copy.

I win. I am good right now, and I also know that I really do win. How can I not when I am strong enough to make my way out. I can’t share everything with this space because I mean it when I say there is going to be legal action. I can handle it. She probably can’t. I (censored) Win.!

I have a dream. It started small, with the idea of teaching other women with disabilities how to get their doctor to adapt to their needs, to make certain that they have proper medical care and it grew. A part of this is the rumor that in California there are accessible facilities for medical care. This access should be for all women and men with disabilities as well as those who are aging. A second portion is a discussion I recently spent two weeks taking part in. The third part is my own experience and the frustration that is omnipresent with my current medical needs.

I am sharing this dream with you for two reasons. The first is that I want your input. I am not an expert on all disabilities and I want to make this dream a reality. The other is that this will be my platform when I make my run for Ms Wheelchair USA. So, here it is, my dream.

I want to create not just an accessible doctor’s office but an accessible facility that has several purposes. First and foremost I want an accessible mammogram, one where you do not have to call, beg, and push to get access but where it is expected that you will need access. This will be furthered by a program to teach you how to adapt to your bodily changes and limitations while being able to fulfill the self exam for breast health. If you cannot adapt, either due to paralysis or other limitations then I want to offer the option of having a doctor or nurse perform your exam for you. Breast cancer risk does not magically vanish the minute you are suddenly disabled. It often goes up!

This goes further, I want accessible exam tables and facilities to offer every woman regardless of function and mobility a pap smear. I have an annual cancer scare, something tries to trick us into thinking it is cancer yearly. This year’s cancer scare surrounds my pap and it’s abnormal results and other tests that scream, “You might have cancer!” I am more worried about the high table, embarrassing lack of hospital gowns that actually fit, and my physical issues hampering the test than the actual possibility of cancer. I am loathing the idea of half climbing half being shoved up on that table, half naked and without any chance at privacy because I need help at times to even move my hips. There are accessible tables. Other forms of accesibility will be needed. I want to hear from any persons of short stature, what are the needs you face in the doctor’s office that are not being met? Even the most accessible table for a tall person will fail you, so please tell me what you need so that you are not excluded from my dream.

I want accessible facilities for rape victims with either severe injuries due to the actual rape or a previous disability. Writing these words has me panting with fear, but, how many women could be protected with evidence that is not obtained? There is enough of a violation with in rape itself, but being violated and treated like you do not matter after is a crime as well. This alone could be my platform focus, this alone could impact the lives of countless women. Accessible rape kit access with proper training for those taking the kit is a must. this is the part of my dream that is frightening, this is the part of my dream that feels the most out of reach. I must reach this goal however, for every victim and survivor that exists now or may exist.

I also want a center for adaptation. The Center for Adaptation would include a kitchen, a bathroom, and other areas that the once-abled take for granted. I still have not managed to cook a meal without harming myself in years, but a place where I had the safety to learn without being in danger of literally killing myself would help. This adaptation center must include potential assistive devices so that before the money is spent by the individual they know if the device will work. I wasted so much money on items that I cannot even use. Everyone does. Most persons with disabilities or freshly disabled persons have a very limited income, therefore this is a key component to creating universal access. Imagine learning how to cook around your limited energy, ability, and strength? Imagine learning how to clean again, and imagine too learning other things such as crafts, or finding ways to adapt so that you can create art? Dream with me and see it, a place of learning for all levels of ability.

Not just learning but socialization. I want people of all ability levels to commune together. There need to be varying support groups, socialization groups, and even a place to coordinate activities for the single individual and the couples. There needs to be a safe place to discuss sex with in ability, there needs to be a safe place where intersetion occurs. If you are gay, bisexual, a lesbian, or a transgendered person with a disability you deserve this just as much as someone who does not overlap two subgroups with in the realm of minority. The able bodied need to be welcomed here too, so that they can learn, assist, and so that there is a lack of segregation.

There needs too, to be a place to work with Service Animals. This facet will have to have answers to questions about the legalities of service animals in the given area, certification challenges, and training suggestions. Although it will not be a place to get a service dog, there needs to be a place where safe support can be found easily. Safe support that can come and help you advocate, safe support that teaches you to self advocate, and safe support for the process of accepting your animal partner.

Less medicalization of life needs to happen, and the focus on that aspect is a place to find good fashion, perhaps this could even become the funding source for my facility. The fashion needs to be adaptable to the wheelchair users needs, most likely this will require custom tailoring. The clothing needs to be affordable but also fashionable. Persons who have disabilities cover all age groups and the institutionalization of clothing is unacceptable. The clothing must also be in a broad range of sizes. Just as wheelchairs need to fit everyone from the small child up to the very large adults, the clothing must as well. Giving a place to access good, quality, stylish clothing for men and women with varying abilities will be a huge part of this, simply out of my own desires. I desire affordable clothing that works with my ability. I do not want to trip over skirts that are too long, I do not want to have my sleeves caught in my wheels if I use a manual chair, and I am presuming this is a universal frustration.

There need to be classes as well to train those with degenerative conditions to adapt, or those with compound disabilities to adapt. Perhaps the adaptation center is a new spin on the idea of an accessible home to learn in, yet, the focus on this portion includes teaching skills you might not have. What brought this to mind is my own degeneration. I lost my ability to walk and my sight is endangered. What adaptation can I have if I cannot see to drive my chair? I must learn and there needs to be a safe place for this. There needs to be a place where it is safe to feel the fear, the hope, and a place where there is hope. There is too little hope for the disabled demographic in this world.

A part of preventative care is dentistry, though I have yet to find a dentist who can work with my limitations. There needs to be a facility for dental care. I have a cavity I cannot get tended due to my combination of allergies and inability to bend backwards in their chairs. This cannot be. This is discrimination, yet to stamp out discrimination there needs to be action. If the facility cannot have a dentist, then it needs to have an office where accessible vision and dental care is listed, where referrals can be given, and it needs to be a place where there is acceptance that every body has a different need.

Disaster Safety is also a concern. During the disasters that hit the world, such as Hurricane Katrina, the disabled are often left behind. Their families may stay so that their loved ones do not die alone, and therefore these devalued people are murdered. It is murder to leave someone behind because it might be hard to deal with their wheelchair. A part of this facility needs to house a program that teaches people how to advocate, adapt, and prepare for emergencies. This program also needs to teach FEMA and other rescue organizations how to rescue the disabled. We are people, we deserve life, and being abandoned because of a wheelchair or cognitive disability is murder. It can be helped, it can be changed.

A lot of the focus here is on prevention and adaptation. My focus is not to cure disability, to wipe it out. That is impossible and I have gained from my own limitations. I cannot imagine a world without Autism as being beautiful, for without it I would not exist. Therefore the focus needs to be on preventative medicine, there needs to be a focus with in the facility on adaptive medicine, and there needs to be a focus on demedicalizing the bodies that have limitations. There needs to be a personalization of existence. I exist beyond my disabilities, though they are a part of me. We need to foster acceptance of self, of difference, and we need to offer a safe harbor for all people with all abilities to commune.

A lot of people are unable to work, are fighting for government assistance, and are dying without durable medical equipment. I want to offer rentals, loaners, and at times even the purchase of needed medical equipment such as CPAP machines, wheelchairs, and walkers. These are just examples. There would be a qualification process, and yet the freedom I felt that first time I sat in a manual chair and had more than three hours of coherent function haunts me. I have nightmares of being trapped without my chair now, I have nightmares that others feel that same terror. Those nightmares are realities. This program could use older equipment that was donated, purchased equipment, and could perhaps eventually include low interest/zero interest loans with minimal payments to allow people to obtain equipment. This could help those with a copay and a minuscule income to make ends meet. This could help someone who is choosing between homelessness and a wheelchair to get the chair and keep their home.

A second facet on employment is access to workforce training. There are already facilities yet at times access is denied based on a lack of visible potential, so, I want to coordinate with them to try and educate and prepare those who want to work but are being told they aren’t worth the training. An entire segment of this facility needs to be coordination with existing organizations to get people what they need, to get people connected with the programs that exist. A lot of people who ask me for help do so because they cannot find programs that fit their needs, even when they exist. A hub in the network could make their impact broader, while in a way delegating some of my dream over to their offices. I know one facility cannot possibly do it all.

This is my dream, this is also why I was so quiet this past week. I was dreaming, trying to put into a coherent idea what is needed. This facility will need funding but the insured can be charged. I do not see this as a fee free environment but money should not cause a person to not be able to participate. If a person can pay, or if their insurance can allow coverage then they should pay. Much of what is offered should be covered under Medicaid/Medicare and other insurances without issue. The rest could be funded via donations and grants. I have no idea what I would call this facility yet, but, that is not the most important focus at this time. Branding must come after a plan for action is laid out.

Share the dream. Share what you see as a need. Please feel free to pass links to this post around, I want to offer a taste of freedom to a set of people that anyone can join, to the only equal opportunity minority. If we band together, we can change the world and create universal access. This plan is flawed, this dream is imperfect yet it is merely a start.